THE FAMILY of a Berkshire six year old needs help to bring their little boy home.
The youngster, a dancer at a Berkshire Dance Academy, where his mum Laura, is manager, remains in a Southampton intensive care unit until funds allow him to return to the family’s house.
Last year the dance academy, supported by Loddon Valley Leisure Centre, represented Team England in the Dance World Cup, Portugal.
The team won gold, and England was the overall winner of the competition.
They returned on a high, but then the dance school received the terrible news that one of its students, Rafi, had fallen gravely ill.
His mum, Laura, says: “On September 29, we received an unexpected phone call from the school to say Rafi had been sick.
“We picked him up and he seemed quite well so we thought it was just a mild sickness bug.
“How wrong we were.”
Four days later Rafi was in extreme pain, being sick and passing blood.
Trips to the GP and A&E diagnosed possible constipation or gastroenteritis, but his pain increased, and so did the family’s concern.
Eventually, he was taken to Frimley Park Hospital by ambulance.
He was suffering from stage four kidney failure, and unsure why, doctors quickly sent him by emergency transfer to Southampton General Hospital.
“When we arrived in Southampton, we were told Rafi had contracted E-coli, and suffered a rare complication,” continues his mum.
“He was diagnosed with haemolytic uremic syndrome, and taken for emergency surgery so he could start immediate dialysis.”
But two days into dialysis Rafi experienced further complications, and after frightening hallucinations, and two seizures, he fell into a coma.
“The next morning, his blood oxygen levels began dropping to dangerously low levels,” continues Laura.
“He was struggling to breathe, and was placed on a ventilator in intensive care.”
The days and weeks that followed this were the hardest for the family.
During months in intensive care, his mum recounts that Rafi endured 28 days of dialysis, blood transfusions, severe brain damage, heart failure, collapsed lungs, chest drains, three cardiac arrests, sepsis, pneumonia, a stroke and hydrocephalus.
She says: “Throughout this time we were told over and over again that his chance of survival was 0.2%.
“We said our goodbyes too many times to mention, and the consultant told us his chances of being able to breathe without a ventilator were slim.
“Rafi was given “48 hours until he failed”, but he proved the doctors wrong, and he is still here.”
The youngster is lucky to be alive, but he has been left with severe brain damage, and his life will never be the same.
Now in a high dependency unit in Southampton, his progress is steady, but slow.
For him to be able to return home, his family needs to make costly alterations:
They need to build an extension to their home for an accessible bedroom and wet room, and essential medical equipment.
They cannot get full funding for this work, and are currently raising money for this – and appealing to any trades who would consider volunteering their time and help with the build.
They are also saving for the down payment on a disabled vehicle which can fit Rafi’s wheelchair, which Motorbility has agreed to help them with.
They need to be able to take essential time off work to be with Rafi as they learn to care for him and help with his neurological rehabilitation.
They require equipment to make Rafi’s life as comfortable as possible.
In December, Loddon Valley Leisure Centre hosted a fundraising event to support Rafi and his family, and his 11 year old sister, Sienna, was among performers in the Christmas show.
It’s expected that Rafi will remain in Southampton for six to 12 months, during which time the family hopes to make the changes needed to care for him at home.
“He can no longer talk, or walk due to his serious brain injury, but we will fight for him all the way,” they say.
The family needs to raise £50,000.
They have set up a gofundme site, where they express warm thanks for the wave of generous support they have received from people.
Many donors who have never even met their little boy have already helped to raise more than £40,000.
The family are grateful for any further help people in the borough can offer them to complete their target funding, and to bring Rafi home.
Anyone wishing to contribute should visit: www.gofundme.com and search for ‘get rafi home’.
For more information log onto: www.berkshiredanceacademy.co.uk and www.placesleisure.org
